How will a colostomy affect me?

Transcription

1 How will a colostomy affect me? Freephone helpline:

2 Contents... Introduction 4 What is a colostomy? 6 What will it look and feel like? 6 Will I always have the stoma? 8 Where will my stoma be? 8 How do I care for my colostomy? 10 Will it smell? 10 Leaving hospital 12 Prescription charges 12 Dealing with your used stoma bags 12 Storing your stoma bags 14 Types of bag 14 What can I eat and drink? 14 Are there any things I should and shouldn't do? 15 Will my stoma change my life? 15 Can I go back to work? 15 Can I go on holiday? 16 Hobbies and sports 16 What about my sex life? 16 Pregnancy and contraception 17 Risks and benefits 17 What should I do if I have a problem? 18 Changes to your stoma Leaks and accidents If your stoma shrinks Sore skin Bleeding Smells Hernias Abdominal pains Changes in how your stoma works Who can I ask for advice? National Stoma Support Organisations Freephone helpline: answered 24 hours 365 days a year 1

3 How will a colostomy affect me? Introduction The content of this booklet seeks to answer the many questions and concerns that you, or a family member or carer might have about a colostomy. Your surgeon or specialist nurse will also be available to answer any questions you may have both pre and post-operatively. Here to support you... If after reading this booklet you find you would like to chat through something that you didn t quite understand in confidence then the Colostomy Association is here to help. The Association has over 100 fully trained volunteers throughout the UK who are expert at living with a colostomy. (Volunteers adhere to guidelines set out by the Association supported by medical professionals). Volunteers have a listening ear and will be more than happy to discuss and answer your queries. Please feel free to use our confidential 24 hr Freephone Helpline There is always someone available to take your call. Remember: you are not alone we are here to support, reassure and give practical information about living with a colostomy. Freephone helpline: answered 24 hours 365 days a year 2 Freephone helpline:

4 3

5 How will a colostomy affect me? What is a colostomy? A colostomy is part of you. Your bowel needs to be diverted away from its usual route and out onto your abdomen. This will mean that your bowel motion and any wind will pass into the stoma bag. The consistency of the bowel motion can vary, and you can still become constipated or have diarrhoea. However, you should still be able to pass urine in the normal way. Because of the type of surgery, bladder and sexual problems can be a risk, although your surgeon will take care to try to avoid these problems. What will it look and feel like? Your colostomy will usually be on the left-hand side of your abdomen. It looks a bit like the inside of your mouth and is soft to touch. Its normal colour is pinkish-red and it should be moist. It may be flat to your abdomen, or may stand out slightly. Your surgeon or specialist nurse will explain whether this will be an end or a loop colostomy, as shown in the diagram below, and will also explain the differences. It is usually referred to as a stoma and that's what we'll call it from now on. At first the stoma will be swollen and will take a couple of months to reduce in size. End colostomy Loop colostomy Large intestine Colostomy Large intestine Colostomy Rectum Anus Rectum Anus Stoma Stoma 4 Freephone helpline:

6 Cross section of stoma Front of abdomen Stoma Large intestine Small intestine (bowel) Stomach Your colostomy will usually be on the left-hand side of your abdomen. Your surgeon or specialist nurse will discuss with you exactly where this will be. Large intestine (colon or bowel) Rectum Anus 5

7 How will a colostomy affect me? Will I always have the stoma? Whether your colostomy is permanent or temporary will depend on why you need your operation. Your surgeon will tell you which it is. If your surgeon plans to join your bowel back together again, you will need another operation at a later date. This means you will need to learn how to manage your stoma and you will go home wearing a stoma bag. You will need to discuss all the facts with your surgeon and specialist nurse. Where will my stoma be? The stoma is usually on the left-hand side of your abdomen. It also needs to be on a part of your abdomen that isn't lost in folds of skin when you sit down or stand up. Before your operation, the specialist nurse will usually mark where the stoma should be as a guide to the surgeon. It will be in a position where you can see it so that you can change your stoma bags easily. However, it may not always be possible to put the stoma in the exact position your nurse has marked. If you need a stoma in an emergency, it may not be possible to decide upon a position beforehand. 6 Freephone helpline:

8 7

9 How will a colostomy affect me? How do I care for my colostomy? You will need to wear a stoma bag to collect your bowel motion. There are a wide variety of stoma bags to choose from and also different methods for managing them which your specialist nurse will discuss with you. The stoma bag sticks to your abdomen and you must change it regularly. Your specialist nurse will explain how to look after your stoma and how to change your bag. Most stoma bags are about the same size as this page and all are designed to be worn under your normal clothes. Many have air filters to allow the wind to escape from the bag gradually and also to absorb any smells. Most stoma bags are also covered with soft material to make them comfortable to wear. You can leave your stoma bag on or take it off when you bath or shower - it's up to you. Water cannot get into the bag or the stoma. If your rectum has not been removed you may still feel like you need to go to the toilet. Sit on the toilet and if you pass blood, mucus, wind or bowel motion, deal with it in the usual way. Will it smell? Yes, but only when you are emptying or changing your bag. Remember that everyone produces smells when they go to the toilet. There should not be a smell at any other time because the bags are odour-proof. You can get special deodorants and sprays on prescription which you may find useful if you are concerned about smells. 8 Freephone helpline:

10 9

11 How will a colostomy affect me? Leaving hospital When you leave hospital, your specialist nurse should give you some of the stoma bags of your choice. You will need to get a prescription for more stoma bags and your specialist nurse will be able to give you advice on this. Your GP will give you a prescription which you can then give to your specialist supplier or local chemist who will supply your stoma bags. You can choose where you get your bags from and which make of stoma bag you use. You need to feel as comfortable as possible when you're wearing the bags, so choose the ones that suit you best. Prescription charges If you live in England, are under the age of 60 and will need a permanent stoma you will need to apply for a prescription exemption certificate by obtaining form FP92A from your GP surgery. Once you have this certificate you will be entitled to receive your prescription free of charge. You will not be entitled to free prescriptions if you have a temporary stoma and live in England. If you think you will have to pay for four or more prescriptions in three months, or 15 or more items in 12 months, you may find it cheaper to buy a prescription prepayment certificate (PPC). If you have been told that your stoma may be temporary, please discuss this with your surgeon or specialist nurse and your GP. Prescriptions in Scotland, Wales and Northern Ireland are free of charge. Dealing with your used stoma bags When you have finished with your stoma bag, seal the used bag on itself, put it in a plastic bag and put it in your household dustbin. Or, if you prefer, empty the contents of your stoma bag down the toilet before throwing the bag away. Don't flush the bag down the toilet unless it is described as a flushable product. 10 Freephone helpline:

12 One-piece stoma bag Flange Bag Bag Two-piece stoma bag Bag Flange 11

13 How will a colostomy affect me? Storing your stoma bags Make sure you store your stoma bags in a cool, dry place away from direct heat or sunlight. Types of bag There are two main types of bag. The one-piece system sticks straight onto your skin. The two-piece system has a separate base plate (a flange) which sticks to your skin, and a bag attaches to this. You can change the bag without removing the flange. What can I eat and drink? You should try to eat regular, well-balanced meals. This can include all your favourite foods. Remember to chew your food properly to help your digestive system. You may find that certain foods produce more wind from your stoma than others. If this bothers you, simply cut down on these foods and you will soon find a balance of food that is right for you. It is important that you drink plenty of fluids, especially water. Alcohol is fine in moderation, but beer and lager can produce wind and cause the bowel motion from the stoma to become more liquid. If you feel you are underweight or overweight, please discuss this with your specialist nurse. 12 Freephone helpline:

14 Are there any things I should and shouldn t do? The important thing is to be guided by your body. Do give yourself time to get over your operation. Do take plenty of rest and let your body recover. Do try to take short walks to begin with and remember you have to be able to get home again. Don't lift anything heavier than a kettle for about eight to 12 weeks following your stoma surgery and, even then, don't overdo it (this can vary depending on your operation). Don't do abdominal exercises for about eight to 12 weeks following your surgery, for example, sit-ups. Don't drive until at least six weeks after your surgery and you feel confident to do so. (You should also check with your motor insurer as policy conditions can vary.) Will my stoma change my life? In some ways it will. You've just had an operation. Your body has been altered and it may take a while to get used to how you now look. However, that's as far as it should go and, with some adjustment, the rest of your life does not need to change. Talking to someone else who has a stoma might be helpful, and your specialist nurse can arrange this for you. Can I go back to work? Yes, but you will need time and rest so listen to your body. Everyone is different when it comes to how long it will take to get back to work and this depends on the type of work you do and the operation you have had. You should discuss this with your specialist nurse, surgeon or GP. 13

15 How will a colostomy affect me? Can I go on holiday? Of course you can. A stoma doesn't stop you from travelling, but do give yourself time. Start with a short trip and see how it goes. If in doubt, ask for advice. The Colostomy Association produce a useful leaflet on travelling, and your specialist nurse should be able to give you some advice. Remember, when you are travelling abroad you will need insurance cover for any medical conditions you have. (Insurance companies call these 'pre-existing conditions'.) Above all, just get on with life and enjoy your holiday. Hobbies and sports Keeping fit and having interests is good for everyone and having a stoma shouldn't prevent you from doing most things. If you prefer, special small stoma bags are available for when you are swimming or playing sport. Your specialist nurse can give you details. What about my sex life? After your surgery, you can continue with a normal loving relationship. Sometimes it may not be possible to continue in the same way as before your operation. Men may find it difficult to get or maintain an erection. Women may experience discomfort during sex. Trying a different position may help. Your partner will be welcome to join in the discussions you have with your surgeon or specialist nurse if you would like them to. Do speak to your specialist nurse. They will be used to discussing this subject with patients and their partners. 14 Freephone helpline:

16 Pregnancy and contraception Before your operation it is important to consider fertility issues, particularly if other treatments are part of your medical plan. We recommend that you discuss this with your specialist nurse or GP. Oral contraceptives may not be fully effective, so you may need to consider another type of contraception. Many women have had normal, successful pregnancies after a colostomy. Risks and benefits Although your doctors and nurses have recommended this operation to form a colostomy 'in your best interest', there are always risks with any surgery. The risks from any operation relate to: anaesthetics; blood clots; and bleeding and infection. Your doctors and specialist nurses will describe the risks from your particular operation in detail, and these risks will be included in your 'Consent to operation' form. Please discuss these risks with your doctor and specialist nurse, but remember, the risks of not having the operation may be considerably greater than the risks of having the operation. 15

17 How will a colostomy affect me? What should I do if I have a problem? If you have any problems or concerns, always talk to your specialist nurse or GP. The sooner they are aware of any problem, the sooner they can help sort it out. Changes to your stoma If you notice any changes in the shape, colour or working of your stoma, talk to your specialist nurse or GP. Leaks and accidents Your stoma bag may leak occasionally. However, your stoma bag should not leak regularly, and you should speak to your specialist nurse or GP if this happens. If your stoma shrinks Check the size of your stoma regularly because it may shrink and you may have to change the hole size on your stoma bag. Sore skin Your skin could become sore for many different reasons. If this happens, your specialist nurse will be able to recommend the right treatment for you. Bleeding Don't panic if the outside of your stoma bleeds. This is fine and shows it is working normally. If there is a lot of blood, or if the blood comes from inside the stoma, you must contact your doctor. Smells There will only be a smell when you are emptying or changing your bag. Remember that everyone produces smells when they go to the toilet. Your stoma should not smell at any other time because the bags are odour-proof. Hernias If you notice a small bulge around your stoma, you may have a hernia and you may need to contact your doctor. Abdominal pains Some discomfort is normal after an operation. This will gradually disappear and ordinary painkillers will help. However, if you have prolonged or severe pain you may need to contact your doctor. Changes in how your stoma works Remember the consistency of your bowel motion can vary and you can still become constipated or have diarrhoea. However, you should talk to your doctor if you have any long-term problems. Who can I ask for advice? There is a lot of information available nowadays, including on the internet. It is possible though that a lot of this information may not be relevant to you. So, if you do want to know more about anything to do with your stoma, all of the following will be able to provide practical help and advice. Your surgeon Your specialist nurse Your GP Your community nurse Colostomy Association Some people find it helpful to meet other people with stomas who are now enjoying a full and active life. Your specialist nurse can arrange this for you if you think it will help. 16 Freephone helpline:

18 How to contact us... Write to: Enterprise House, 2 nd Floor, 95, London Street, Reading RG1 4QA General Enquiries: Tel: Helpline: cass@colostomyassociation.org.uk Website: Find us on FACEBOOK connect with fellow ostomates today! Date of Publication: April 2014 Ref: CA/ Colostomy Association Registered Charity Number: